Wednesday, July 29, 2009

Boston Appointment

Let me put all of this out here while it's fresh on my mind.

First off, we were late to Baylee's appt. Not because of anything that was our fault, but they sent us the wrong appt letter so we had no idea. No problem though... they were so kind and worked us in ALL DAY!

We arrived to the Cardiology clinic around 11:15. Baylee did her height and weight check, went for the Echo and had her EKG. Then, we were discussing everything with Dr. Mary Mullen when she was called to an Emergency and had to leave. So, we went and grabbed some lunch because at this point it was 1:00 pm (our time) 2:00 pm (Boston time). We came back and Baylee did a 6 minute walking testing which she passed with flying colors. Then, we went to speak with Dr. Mullen once again. This Dr. completely amazes me. She picked up with her conversation RIGHT where she left off without looking at a chart or folder! LOVE HER! After we spoke with her we went down to the Lab dept and they drew some blood. OUCH! She does NOT like needles... she is just like me when I was little!

So, right now this is what's going to happen.

-She will be placed on Oxygen only at night while she is sleeping. This is to help dialate her vessels and relax them while she is sleeping. -We will also have another sleep study performed to make sure once again her tonsils are not causing all of this. -They are not adding or taking away any meds as of right now. -She will have another Heart Cath either in October, but no later than November. -She is also a tad bit restricted on activity. No rough sports or anything like that. She basically needs to learn to limit herself on activity and know when she needs to stop and rest.

All in all it was WELL worth the trip up here! I'm so thankful I researched and found the BEST when it comes to all of this. I will post LOTS of pictures when I get home (not just of the hospital, but our little bit of sight-seeing we were able to do).

Background

Praying for Ryan

Praying for Karsie

My Peepers!

Omphalocele and PPH/RVH

This page is for Baylee and Blair. Blair was born with a Giant Omphalocele on April 7th, 2008. She spent 7 weeks in the NICU at AR Children's. Amazed by the Dr's she came home at the end of May only on a little bit of O2 and no other medications. She was also diagnosed with a 3mm VSD of her heart. That has since CLOSED COMPLETELY and will not require surgery. Recently we found out that she was born with her heart on the right side of her chest. She had surgery on Aug. 20th without expanders. The Dr's were able to do a closure surgery with a bit of alloderm pulling the muscles together. We will be in St. Louis for a few weeks while she recovers.

Baylee is an energetic 4 year old. She loves swimming, her babydolls, playing outside and most of all her little Sissy! She is our little princess and we have been amazed at how well she has reacted to her little Sissy. She is WONDERFUL to her little sissy and loves her so much!

She was diagnosed on April 13th with a Right Ventricular Hypertrophy due to Primary Pulmonary Hypertension. In July we traveled to Boston to see a Hypertension Specialist. I LOVE this Dr! She is wonderful and answered all of my questions. She will have another Heart Cath on Dec. 1st to check the pressures in her heart again. She is now sleeping with a bit of oxygen just as a precautionary.

I hope that everyone enjoy's reading about our lives and if you learn something in the process that's even better!